Pain and Palliative Care

COVID: Another Source of Pain… and Anxiety

So after nearly 36 months of working so hard to avoid COVID, I’ve got the spicy cough.

I’m not actually coughing too much, but I’m congested, I’ve got itchy eyes, I’m aching everywhere and I’m exhausted. Those last two things aren’t all that unusual. Aches and exhaustion are part of living with fibromyalgia, but this is much more fatigue and achiness than I’m used to. The places that usually hurt just a little now hurt a lot, and the places that hurt a lot… I don’t want to talk about that. I’ve also lost my sense of taste. Scrambled eggs are kind of gross when you can’t taste them and even simple things I love like peanut butter, strawberries and tomato soup haven’t had any flavor.

COVID is scary. Even three years in, it’s still killing a lot of people. Not as many as a year ago, sure, but the danger’s still there. But I’m more worried about long COVID. So many long COVID symptoms are similar to fibromyalgia symptoms. I’m not sure I could tell whether I was experiencing new symptoms or just my usual ones getting worse. And I’m not sure how intense those symptoms could get.

Pain and Palliative Care

Whether or not long COVID shows up, I have to continue to deal with the fibro. And since I’ve been in rehab, my care team has grown. A palliative care nurse practitioner has joined my team. And I have a lot of capital-eff Feelings about that.

We usually think of palliative care and hospice in the same breath. And they do go together, but they’re not the same. Both are trying to provide comfort and relief from pain and symptoms, but the goals are different. Hospice care is end-of-life care, usually when someone is not expected to survive beyond six months. Either because there are no more treatment options for an illness, or because someone has decided to stop treatment.

Palliative care is about comfort and maximizing life, with or without a focus on cure. Sometimes it’s a part of treatment for a serious illness where a cure and full recovery is expected, as with some kinds of cancer. Sometimes it’s a situation like mine, where the goal is stability and symptom management. It’s always about helping you to live the best life you can. 

Focusing on the Big Picture

When someone first told me that the doctor who is overseeing my care here in rehab refers all of his chronic pain and chronic illness patients to the palliative care program, I was thrilled. It sounded like a great idea: to have someone whose focus was coordinating my care helping me live the best version of whatever life I can live (despite being mostly confined to this hospital bed for the past few months and who knows how much longer). 

Managing chronic illness means juggling: the various medical providers, the medications, the other treatments like PT or massage. And home care stuff. Plus there’s also just the regular life things that everyone has–work, family, friends, groceries and housework, all of that. People with chronic pain or chronic illness are trying to keep up with it all, even when it sometimes hurts too much to lift your arm to scratch your nose. Or when you’re so tired that even turning over in bed feels like a Sisyphean task.

I thought it would be great to have a point of contact who might have a more direct line to different health care providers. And I was glad that I might be able to get some mental health support that was focused on the chronic illness parts of my life. I was hoping someone might also be able to help me coordinate the other stuff I might need when I get out of here, like how to find the kind of assistance I might need at home; someone to do the chores I really can’t do on my own like making beds or vacuuming floors. Things like that. 

Tears of Grief, Tears of Relief

So after I’d been here in rehab for a while, I met Diana, the nurse practitioner who is heading up my palliative care team. She introduced herself, and, with remarkable efficiency, explained the program to me. I still thought that what was being offered sounded great. We went over my medications, what was challenging, how I was feeling. She asked me about my goals, short term and long term. She wanted to know what makes me happy. That’s not something that people had really asked me in the context of my illness before. 

Then Diana gave me her card and she left.

I was alone again. No roommate, just the quiet and my thoughts. I lowered the head of my hospital bed. Turned my back to the door. Buried my face in the pillows. And cried, hoping no one passing by the open door would hear me. I didn’t want to answer any questions. I just needed some uninterrupted time to feel all the feelings. To feel all the grief.

American Culture: Pain and Grief are not Welcome

As a whole, American culture is pretty terrible at dealing with grief. Death, probably the most familiar source of grief to us, has evolved into one of the off limits topics, along with sex and a few other things. And while our mores around talking about sex may have shifted quite dramatically, the same isn’t so for death. We’ve sanitized death, placing so much distance between us and the process of dying that we don’t really know how to talk about it. Which also means we don’t really know how to talk about grief, whether it’s death, the end of a relationship, or a major change in our health. Even my therapists have been strangely distant when I wanted to talk about illness and disability and the grief I was feeling.

The experts say there are seven things you grieve over with chronic illness:

Hope
Control over your body
Integrity and dignity
Healthy identity
Faith that life is just
Social relationships
Freedom

I’ve even written about some of them. I had so much hope going into this first meeting with Diana. I appreciated her honest approach to things, and looked forward to the ways she would be able to help me navigate a world that’s becoming more and more complex for me as time goes on and my needs change. But after she left, when reality hit, I was overwhelmed.

Just because I Write about Grief Does not Mean I Deal with it Especially Well

On paper, I may sound like I know better, because I write about the topic of grief a lot. But I’m just as human as everyone else. Grief is weird. It’s hard and awkward and uncomfortable and it makes some things a little too real. I really do wish I were better at dealing with it. I’m a trained social worker. I’m experienced with grief. I’ve lost my Dad and gotten through that. And even with that, even in spite of my long-standing appreciation for the ways that Judaism helps us process grief and gives us space for mourning, I found that when it came to grieving the ways I’ve lost me, I was completely overwhelmed.

I tried to sit with what I was feeling. Tried to hold space for my own discomfort. I dug into my radical acceptance skills. And the only conclusion I could draw is: “this royally sucks.” I felt anger and frustration and sadness and fear. All at once and one at a time, each of those emotions bubbled up inside of me.

I did a lot of crying over the next few days. I tried to distract myself with knitting and writing and books. And I talked to friends about it. Maybe it helped. Maybe it didn’t, and things were shunted aside in the lead up to the holidays, as I focused on the things I was feeling about being here through the holidays. Grief over my illness didn’t really come up during those weeks. And if it did, I brushed it aside. Until last week when Diana came to see me again.

Pain and Privacy: Letting Others In

She arrived early on Friday morning, right around the time I’d be dozing off again for a little nap between my early morning medication and breakfast. I was already quarantined for COVID although I hadn’t tested positive yet. She stood by my bed, covered by a face shield, a bright yellow isolation gown, and blue gloves. Then she cheerfully asked me about how I was feeling. I was feeling fine, I said. But as we talked, I opened up a little more.

I told her that I needed a mental health referral, because there was a lot going on. And because I expected the PTSD that would come from processing just how tenuous my situation was when I first went into the hospital in August would be overwhelming. I talked honestly about how I was struggling with pain management. I talked about not getting relief from the pain management routine that I had. But that when I’d spoken to the doctor coordinating my care, he hadn’t wanted to make changes to the plan I had.

But most of all, for the first time, I was really honest about the way my day to day pain level had crept up from its usual 3 or 4 on a good day to definitively a four on a good day, sometimes creeping into a five. I talked about how that wasn’t working for me, and it was hard to deal with.

How Palliative Care… Palliates and Cares

Her answer was honest. It wasn’t comforting. Or reassuring. It was painfully, brutally honest. “You might not ever get back down to that daily three or four. You might just be at a four or five.”

We talked for a few more minutes. She confirmed the things I needed her help with, some referrals, some medication adjustments, things like that. She said she’d give me a call later in the day to update me on what was going on. I said I’d check in with her in two weeks and would see her next month for her next visit.

And that was it.

Pain and Honesty

She left, and I cried again. She makes the complicated parts of managing chronic illness easier. Sometimes she gets results on requests for referrals in hours, when otherwise it might take me weeks. She makes minor adjustments herself to some medications or to the food I’m getting. The major adjustments still have to go through the doctor. And she is honest about life with chronic illness. Painfully honest. And her honesty hurts. A lot.

When she leaves, the physical pain is usually under control because I’ve got pharmaceutical options. But nothing takes away those deep emotional gashes I feel when I meet with her. I just have to live through them.

What Hope can Look Like with Chronic Pain

There’s a reason we are afraid of grief. There’s a reason we hide from it. Sometimes the grief from living with all of this is bigger than the physical pain. Because if there’s one thing I’ve learned it’s that I can handle pain. I can live my life with my joints aching. But I what happens when I can’t live my life? when the disability gets in the way of activities that give my life meaning? I don’t like needing help bringing in the groceries. And I miss playing viola.

Sometimes I wonder if I’ll figure out a way to be okay with how things are, and to find the joy and self-confidence again. To be okay with the way things are now.

Where does the grief come from? It comes from the fact that when I look at who I am now, I don’t recognize myself. I knew how to find joy and meaning. But I’ve changed a lot. My options are more limited and I can’t find that joy, that confidence now.

Pain and Confidence and Joy

I want to be as joyful as the twenty-something-year-old Erika who could dance, without noticing the crowd around her, just lost in music and movement. To be the person who, one night out at the club, was told: “You look so at home in your body.” I was talking to an ex-girlfriend about that Erika the other day and she said to me: “You were haaaaaawt!” I miss haaaaaawt Erika.

I don’t miss the hawtness (well maybe a little). But that Erika had a spirit and a joy and a confidence that I can’t find anymore. Instead of feeling that joy that brought me confidence to flirt like that, to dance like that, my energy is spent worrying about how people see disabled-me. Or trying to deal with the pain and fatigue and general exhaustion of life with chronic illness. Sometimes both. The more 2023 Erika struggles to find that confidence the harder it is to do the things that bring joy.

And if I can’t find that confidence or that joy again, I’d like to think I’d be okay with it, as long as I can remember the way that joy felt; and find new things that bring joy now. My physical limitations have really hurt my confidence in some areas. But there are new things I’m gaining confidence in. And with confidence comes joy. Sometimes, when I feel a crack in who I am, a little bit of joy can fill that crack. And maybe if I can do that a little more, I might hurt a little less.